Geriatric Sleep Research Program

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Title

Factors Influencing Subject Recruitment for Sleep Disorders and Dementia Research

Abstract

Although dementia is quite prevalent throughout the elderly population, recruiting subjects for research studies pertaining to the illness is often difficult. There are several obstacles to recruitment for dementia research. They include prohibitive expenses and transportation difficulties and expense. Additionally, a lack of education about dementia, which includes limited knowledge regarding treatment options and a lack of information regarding the causes of dementia, may also impede recruitment efforts. Many feel that dementia is a normal part of the aging process. Such attitudes have been linked to lower recruitment rates. Many cultures have a tradition of taking care of their own and are guilt stricken upon having to institutionalize their elder charges. Additionally, many cannot relate to the attitudes of racially/culturally different providers; this often results in suspicion toward health-care providers. Overall, studies have shown that aggressive recruitment strategies such as a phone call or a meeting with the researchers can increase participation rates from 63% to 93%. In our own experience in dementia research, the initial contact with the proxy was made over the phone, at which time the proxy consented verbally and agreed to meet with us to give written consent. However, either at the meeting or before the meeting, most proxies changed their mind and refused to allow their elder charges to participate in the study. Our purpose in this study is to learn about factors and issues that limit recruitment in research involving consent by proxy. Our central hypothesis is that in research involving consent by proxy, many potential subjects who assent to our research will not be able to participate in the study due to lack of consent from their next of kin (NOK) or power-of-attorney (POA) for a variety of cultural and educational factors.